Monday, February 29, 2016

New survey gives voice to people living with a rare and devastating lung disease: “When I think of IPF I think of breathlessness”

INGELHEIM, Germany - Monday, February 29th 2016 [ME NewsWire]

International survey provides unique insights into the emotional truths of living with idiopathic pulmonary fibrosis (IPF) Worry and fear are the most common emotions experienced when diagnosed with IPF Patient support groups make people with IPF feel less isolated and provide access to important information

(BUSINESS
WIRE)-- An international survey of over 500 people living with
idiopathic pulmonary fibrosis (IPF) in more than 20 countries worldwide
reveals the real-life emotions faced by those with the devastating
disease.1 IPF affects approximately 3 million people worldwide,2,3 yet
the reality of the condition remains little understood. The results are
launched on Rare Disease Day 2016 to coincide with this year’s theme
‘Patient Voice’, recognising the crucial role that patients play in
voicing their needs.

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Diagnosing
IPF can be difficult, and around half of patients are initially
misdiagnosed.4 The average time from first symptoms to diagnosis of IPF
is between one and two years,4,5 and patients are then faced with the
reality that they have an incurable disease. The emotional turmoil
people with IPF experience is clearly reflected in the answers; many
respondents said they felt ‘worried’ (49%), ‘afraid’ (45%), and
‘confused’ (34%) when they finally received a diagnosis.1

When
asked ‘what do you think of when you think of IPF?’, the thought most
frequently expressed by respondents was breathlessness (33%),1 one of
the most common symptoms of IPF.6 As the condition causes the lung
tissue to become thickened, stiff and scarred over time,7 the reality is
that shortness of breath makes it difficult for people affected by IPF
to carry out everyday tasks such as showering or getting dressed.6

The
research reveals that the progressive and unpredictable nature of this
fatal lung disease places an emotional burden on those affected by the
condition; almost a quarter (23%) of respondents stated that they feared
not being able to do the things they used to do before having IPF and
one in three people said they felt “frustrated” by the condition (29%).1
The emotions felt by people affected by IPF vary following diagnosis
and after receiving medical care; 31% of respondents felt that emotions
become more positive and the outlook brighter at that time whilst 28%
felt that emotions become more negative and the outlook less bright.1

Dr
Toby Maher, Consultant Respiratory Physician at the Royal Brompton
Hospital in London, United Kingdom commented: “This thought-provoking
research echoes what my patients talk to me about when we discuss life
with IPF. Thankfully our understanding of the treatment of IPF has moved
forward a lot in the last few years. As physicians we can help address
the negative emotions many patients experience at diagnosis and improve
how they see their future with the disease so they feel positive about
starting effective treatment.”

Early and accurate diagnosis of
IPF is important, as this enables the early initiation of
pharmacological treatment and other disease management options.8

Patient
advocacy groups also play an extremely important role in making it
easier to live with the condition; 42% of respondents said that patient
groups made them feel less isolated and provide access to important
information.1

Robert Davidson, President, Canadian Pulmonary
Fibrosis Foundation (CPFF) said: “Living with IPF can be frightening and
too few people appreciate just how isolating living with a rare disease
like IPF can be. This research is an important way for those of us who
are affected to be heard, so that understanding and support for the IPF
patient community continues to improve.”

While a future with IPF
is at times a daunting prospect, many people affected by the disease
expressed a positive view of the year ahead. When asked what they or
someone they know with IPF would like to spend time doing over the next
year, 39% said they would enjoy time with family and one in five (21%)
said they would like to travel or go on holiday.1

~ ENDS ~

Please
click on the link below for ‘Notes to Editors’ and ‘References’:
http://www.boehringer-ingelheim.com/news/news_releases/press_releases/2016/29_february_2016_ipf.html

Intended audiences:

This
press release is issued from our Corporate Headquarters in Ingelheim,
Germany and is intended to provide information about our global
business.

View source version on businesswire.com: http://www.businesswire.com/news/home/20160229005723/en/